Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Saturday, July 31, 2010

As many readers will already know John Callahan the controversial quadriplegic alcoholic cartoonist died a few days ago--precisely two days before the 20th anniversary of the ADA. I had hoped he would draw a typically ironic if not nasty cartoon to commemorate the ADA. Perhaps because of my surgery I am crankier than usual but I must say I tired of hearing about all the great things the ADA has done for people with disabilities. Yes, the ADA is helpful, a fact pointed out by numerous mainstream news media outlets. However, no mainstream media resource really delved deeply into the ADA and how it has affected the daily life of people with a disability. Given this, I find the death of Callahan to be of particular interest. Calllahan, like me, was a bad cripple for much of his life. We were both paralyzed in the 1970s, Callahan in 1972, me in 1978--well before the ADA was ever dreamed of. We both got first class rehabilitation--he went to Ranchos Los Amigos Hospital, 15 miles from Downey, CA. I went to rehabilitation at Columbia Presbyterian Hospital. These were vibrant days in the history of modern rehabilitation. No established procedures existed, therapists were making things up daily to enhance the lives of people with SCI. These were exciting times. Callahan and I coped by working to the point of exhaustion--fear will do that to a person--and drinking very hard and often. Where we departed was in career choices--I went into academics and Calllahan became a famous cartoonist. I loved and hated his cartoons. They were brutally honest, hysterically funny, twisted, and in some cases just plan sick. His first cartoon/poem was penned while he was at Ranchos Los Amigos. It depicted a quadriplegic writing "Quadriplegia, rose are red and begonias are thick, I can feel my hands, but I can't feel my dick".

Callahan's death inspired me to read his wonderful autobiography, Don't Worry He Won't Get Far on Foot written in 1989. I have read this book many times. Our experiences were very similar and our shared anger deeply felt. None of our anger was based on the fact neither of us could walk. Our anger was based on the gross social inequities that existed then and now. In rereading Callahan's book I was struck by how much rehabilitation has changed for paralyzed people. Back in the 1970s rehabilitation typically lasted many months. Callahan was in rehab for six months. He attended Portland State University under the Vocational Rehabilitation Act. He struggled mightily with alcohol abuse and eventually straightened out his life through AA. What struck me in reading about Callahan's rehabilitation in the 1970s was its duration and free flow of ideas and solutions. No protocols had been established. What has not changed however is the cost of paralysis. Back then Callahan's primitive electric wheelchair cost $5,000, a hospital bed another $5,000, wheelchair repair costs $200 every few months, medication, $200 a month and persona care attendants another $800 a month. He estimated it cost $1,475 a month to be a quadriplegic. That left him a grand total of $75 a month to live on. He wrote that "I would sit at the kitchen table and try to decide what combination of rice, beans, ramen noodles, potatoes, and day old bread would last the longest and cause the least damage to my system".

Has the ADA helped the newly paralyzed? In a word, no. The average length of stay in a rehabilitation hospital for paralyzed person is 44 days. Yes, 44 days! That is woefully inadequate to learn how to cope with paralysis physically and mentally. We can thank the insurance industry for this. The average first year expense associated with being a paraplegic is $198,000. The average first year expense associated with being a quadriplegic is $417,000. The life time health care costs associated with being a paraplegic who is injured at 25 years old is $428,000. The life time costs associated with being a quadriplegic who is injured at 25 years old is $1.38 million dollars. These are 2010 averages. Half of the people who experience a spinal cord injury are insured. I don't think the ADA has done one whit of good for these people. The ADA sure has not helped me financially as my paralysis represents significant financial drain. Combine this with the glacial pace of social change as it pertains to attitudes toward disability in general and it is no wonder the vast majority of people with a disability are unemployed. This is what I rail against and it what Callahan's cartoons brilliantly amplified. Thus he noted in 1992 NY Times Magazine story that "Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That is what is truly detestable". These words just don't resonant but are still relevant in 2010. This is where the ADA has failed miserably.

Friday, July 30, 2010

I experienced my first miracle! The miracle was not that I came through surgery with flying colors and zero complications. Indeed, for major surgery it went as smoothly as humanly possible. The miracle I refer to was the care and compassion displayed by those I met. From the moment I entered New York Hospital I was treated with the utmost respect. Everyone I met was kind, excellent at their job, and caring. The position of the employee did not matter: the person that took out the trash in my room smiled, said good morning if I was awake and appeared happy. The fourth year medical student that observed my surgery introduced himself, explained his presence and stopped by my room after surgery at least twice to say hello. The nurse that interviewed me before surgery was thorough, had a wonderful brogue, and helped arrange to send me to an older part of the hospital that had private rooms for short term stays after surgery. In so doing my close friend who was going to stay the night with me to insure I received adequate post surgical care could remain in my room. A comfortable cot appeared for her—something we did not request. All this was great but the greatest shock was the nursing care--it exceeded my wildest expectations. The ratio of patient to nurses was appropriate as in the nurses could actually do a thorough job caring for their patients. Better yet, the nurses were young, smart and dedicated. They were good at their jobs, listened to me carefully, and we worked together to be sure I had no complications. It didn’t hurt that were also very pretty and I got a chance to flirt with them!

Another important variable was that each and every question asked was directed at me and not my friend. Not once did a hospital employee make a social gaffe that people with a disability experience daily. Frankly, I am stunned by the kindness I experienced. Aside from my worries about surgery, my main concern was about what would happen to my wheelchair while in surgery. I expressed this concern repeatedly. When it came time for surgery I was escorted through a maze of hallways to the operating room. I got the name of the man who escorted me and was responsible for my chair and humorously told him if my chair disappeared I would spend the rest of my tracking him down so I could shoot him. I had no reason to worry as the surgeon himself took responsibility and took my chair to my friend. He knew it was a central concern and told me that I now had nothing to worry about except that little thing called surgery—a joke that relieved the tension I felt.

What I experienced was a marvel—something I thought was no longer present in modern medicine, humanity. I was treated like a human being about to undergo a major surgical experience. All those I met before and after surgery were kind and caring. I sincerely hope they get to read these words as they all did a great job.

So here is the bad news—my ass feels like it is on fire. The surgical scar is on the perineum and I have a JP drain as well. I cannot sit up for more than hour so my life style for the next ten days will be severely compromised. I am also assuming it will be a month before I can really sit up and not worry about my skin. This is a bit of over kill on my part but skin integrity is something I take seriously. And here I can proudly proclaim that in 32 years of paralysis I have had but two sores on my ass neither of which required hospitalization. Sometimes being paranoid about skin integrity is not such a bad thing.

I may be a self-described bad cripple but even bad cripples can report happy news. And I am indeed quite happy. Surgery went well. One and all I met were respectful, professional and compassionate. A month of ever present worry has ended. Now I look forward to managing my urological care as I once did in a mater of weeks. My ass may burning as I write these words but life has never been so sweet.

Sunday, July 25, 2010

I will not be posting anything new for at least the next week. I am having surgery tomorrow. Rest assured I will have much to say about my experience. Apparently even prior to admission I am asking too many questions--you know little concerns such as what happens to my wheelchair while I am in surgery. I also asked if the hospital room had an accessible bathroom--the answer was "I think so". Not exactly comforting. But I suppose that is not what happens in hospitals. I am not sure if I am getting ready for surgery or battle. A bit of both perhaps.